Supplements

[AKNate]

Hi Everyone,

I did a search on the forum to see if there is a list of supplements/vitamins everyone is using which they found helps a bit, but couldn't find any so i thought i'd start this.

My husband is only currently taking magnesium powder daily to try alleviate cramps.

What have people found useful/helpful?

 

[diagnosed2016]

B12 methyl shots I think have been the best thing we've done so far, but I have hubby on a bunch of things. Several people have their own supplement protocols posted over on alstdi website which you might find interesting/ informative

 

[AKNate]

That's what prompted me to write this thread - i read about B12 but have never heard about it so am really interested. Do you go to the doctor to get the shots or are there vitamins you buy?

How have they been helping your husband??

 

[GregK]

That's what prompted me to write this thread - i read about B12 but have never heard about it so am really interested. Do you go to the doctor to get the shots or are there vitamins you buy?

How have they been helping your husband??

There are a couple threads on this already...

 

[patoyeah]

PROLETARIAT PROTOCOL (Dave J. version) (#415951) - ALS Research & Treatments - ALS Forums

covers most supplements, cannabis and ingesting coconut oil may help ( 9+ tablespoons daily )

Take care,

Pat

 

[AKNate]

There are a couple threads on this already...

On B12? Ok i'll have a look, thanks.

I just couldn't find a nice list without having to look at various threads and search terms

 

[GregK]

On B12? Ok i'll have a look, thanks.

I just couldn't find a nice list without having to look at various threads and search terms

If you find one or more to be useful, link to them here. That'll meet your goal and lessen clutter!

 

[diagnosed2016]

That's what prompted me to write this thread - i read about B12 but have never heard about it so am really interested. Do you go to the doctor to get the shots or are there vitamins you buy?

How have they been helping your husband??

You get a script from your dr but have to find a compounding pharmacy that a) does injections and b) can do the concentration you need (25mg a day). It's way more than any pill form. It's also not covered by insurance and costs about $200 a month. I haven't found it cheaper than that.
Hubby feels an energy difference when he hasn't had his shot. He's been on it for six months and his progression thus far has been slow. Whether that's because of things he's taking or just his natural progression we can't know.

 

[affected]

You get a script from your dr but have to find a compounding pharmacy that a) does injections and b) can do the concentration you need (25mg a day). It's way more than any pill form. It's also not covered by insurance and costs about $200 a month.

I have no idea how it works here in Australia but it won't be on the PBS even if he is now on the full disability pension. (diagnosed2016 the OP is in Australia)

It's really important you take the right B12 the right way, or it's a total waste.

Please do let us know how you go if you decide to give it a try in Australia.

I remember a friend bringing Chris a bottle of B12 tablets and stating that B12 is really good for the nervous system ... pity Chris couldn't swallow anything at the time, but I took them over the next couple of months, goodness knows my nerves needed everything they could get!

 

[Nikki J]

You need specifically methylcobalamin and maybe searching for that would yield more info. There are lots of things to consider and I think it is pretty impossible to take everything physically not just financially

There is a study backing up the methylcobalamin in early disease. Other things that have had very small human studies showing small benefit are tudca and acetyl l carnitine. There is or was a study of l serine; I heard a positive rumor ( rumor nothing more). Having a good not just adequate vitamin d level is probably neuroprotective. My neuro believes in high dose vitamin e. This is controversial due to risks but she bases it on lower rates of ALS in people with high vit E intake. Read the lunasin threads here. Look into turmeric for inflammation

You really have to do the research and decide for yourself. I have always felt that what helps people with sod1 variants may differ from what helps c9 etc

 

[diagnosed2016]

Tudca is impossible to find right now!

 

[Nikki J]

It may be impossible to find 500s which I never did find but apparently existed but Tudca 250 is available on amazon right now ( I just double checked)

 

[lgelb]

Nikki, I think this is the L-serine study you mean. Was not designed to support efficacy, only safety.

 

[Nikki J]

Yes thanks Laurie. I am not sure then where the benefit rumor originated except possibly anecdotal

 

[lgelb]

I can see how it surfaced. The reason they were doing the safety trial was there is some basic research in CNS more generally suggesting possible neuroprotection.